Tilly Young’s brave neurofibromatosis battle

An optic nerve tumour caused by a complex condition induced early puberty in a Lethbridge eight-year-old, who is giving back to the community despite her own health battles.

Tilly Young, an 8-year-old girl from Lethbridge, has NF1. Picture: Mark Wilson

Tilly Young’s family received a “massive shock” when they discovered she had a tumour on her optic nerve that induced early puberty.

The eight-year-old from Lethbridge was diagnosed with a complex genetic condition called neurofibromatosis (NF), which causes tumours to grow on nerves within the body, in April last year.

She had been exhibiting signs of early puberty.

“Tilly started experiencing what a teenager would when she was seven,” mum Stacy Walsh said.

“As parents we certainly weren’t ready for it.”

A paediatrician noticed Tilly had a number of birthmarks.

Cafe-au-laits — flat coffee-coloured patches on the skin — are a symptom of NF.

Tilly Young with Bruce. Picture: Mark Wilson

Tilly’s family had previously had a “turn”, which meant her eyes sometimes did not look the same way, examined.

The paediatrician wanted to check it wasn’t being caused by a tumour.

An MRI revealed a tumour, which had been causing Tilly’s vision to deteriorate and pushing on her pituitary gland, causing early puberty.

Tilly was diagnosed with NF.

Ms Walsh, a mental health nurse, had never heard of NF before Tilly’s health woes.

Tilly has been undergoing chemotherapy since July to shrink the non-cancerous tumour, and has injections to stop early puberty.

Ms Walsh said NF had a “huge impact” on Tilly.

She misses a day of school every week to travel to Melbourne for treatment.

NF can be associated with learning difficulties and Tilly can require more explanation than her peers at school.

Despite her health challenges, Ms Walsh said Tilly “just gets on with it”.

“She’s pretty amazing,” she said.

“She’s a very kind person.”

Tilly, who loves art, has even started her own business making earrings, and donates a portion of each sale to charities who have helped her.

NF is a group of genetic conditions that cause tumours, andTilly has NF type 1 (NF1).

NF1 affects one in 2500 people in Australia and is the most common of the three conditions.

Progressive and unpredictable, NF can lead to significant health issues such as deafness, blindness, physical differences, bone abnormalities and chronic pain.

May is NF Awareness Month, and Tilly’s family will be fundraising for the Children’s Tumour Foundation, with Ms Walsh to hold an afternoon tea at her work and Tilly selling ribbons through her business.

Foundation chief executive Leanne Dib said: “We are nowhere near a cure for NF.”

“Recent developments in treatment options have proven promising in slowing the development of some tumours, but are limited in terms of accessibility and most are still in the trial phases,” she said.

The Children’s Tumour Foundationaims to support life-changing research through the launch of a new virtual fundraising challenge, Steps Towards a Cure.

People canstep, stride or ride solo or in a team and pick a goal of how many kilometres they want to cover across the month, and set a fundraising target.

For more information, visit www.stepstowardsacure.com.au.

Originally published as Tilly Young’s brave neurofibromatosis battle